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The value of life – Eugenics strikes back as human right in the 21st century?

Despite the efforts and overarching results of the disability rights movement to protect human rights of persons with disabilities there have been a number of concerns lately regarding the promotion of abortion in case the fetus has a chance for any kind of disability. In the following, I am trying to give a brief overview on the debate by pointing out main aspects and challenges.

Since the end of the Second World War the International community declared in international human rights law that no one shall be deprived of his or her life. Moreover considering the right to life as a fundamental right, it shall be protected by law according to the Convention for the Protection of Human Rights and Fundamental Freedom (Article 2.). One could expect that the existence of the UN Convention on the Rights of Persons with Disabilities guarantees that no one questions the raison d’etre of those who are labeled as “disabled” in our society. Disability is an evolving concept and we, academics, human rights activists and members of the disability movement hope that the paradigm shift from the medical to the social model has already taken place and is acknowledged by all. Disability shall be considered a human rights issue. It is also important to admit that the main challenge in integrating persons with disabilities, is not their physical or mental impairment, but the barriers which were historically set-up by the society itself.

A few months ago an article was published by Alberto Giublini and Francesca Minerva discussing the possibilities of “after-birth abortion”. Eugenics seems to arise and spread more and more widely in the society. Not surprising after the developments of genetic and reproductive technologies in the end 20th century. The authors argue that in cases where an abnormality of the fetus was not detected during the pregnancy, there should be an opportunity to kill the new-born baby. They are referring to the same moral-status of the newborn and the fetus and claiming that “killing a newborn could be ethically permissible in all the circumstances where abortion would be”.

The wording of the article is very controversial. Terms like “Abnormality”, “moral value”, “potential for acceptable life”,” normal life versus down-syndrome” are reminders of the Nazi ideology and directly reference “racial hygiene”. Those words and ideas have already led to the extermination of the “undesired population” during the Holocaust. Learning the lesson from the Second World War, the International community has been aiming to protect the right to life of all human beings. The Convention for the Protection of Human Right and Fundamental Freedom clearly states in Article 2 that everyone’s right to life shall be protected by law.

On one hand, the issue has an obvious human rights aspect considering the right to life of persons with disabilities and the attempts to avoid genetic discrimination (See more on this in our previous post: http://disabilityrightsresearch.com/2012/03/22/european-parliament-hosts-international-seminar-on-genetic-discrimination/ ). On the other hand, some people argue the importance of women’s right to self-determination and they are strongly concerned with any restriction of a woman’s right to make her own decisions. Taking a liberal approach, no one shall regulate on what base a woman may decide to abort her fetus. One can have either economic, personal, or health reasons. It still remains a private issue. Therefore there is a visible clash between the rights of women and persons with disabilities when it comes to protecting the life of a fetus with disability.

There is currently a case in front of the European Court of Human Rights (ECHR) where a Latvian mother gave birth to a baby with Down syndrome in 2002, it is considered a personal injury case since she was not adequately informed of the antenatal screening test, therefore she was not allowed to choose whether to continue the pregnancy or not. Her case is filed under the right to respect for privacy (Article 8 of the European Convention on Human Rights). The decision of the Court will have a great significance as this is going to be the first time when the ECHR has to pronounce the right to abortion with regard to the health of the baby. It may lead to consideration of a fundamental right to abort a fetus having disability.

It is certainly a challenging time to react adequately and effectively in terms of protecting the rights of disabled, but respecting self-determination of women at the same time. In my opinion the key element in the debate is the promotion of abortion which shall be strictly regulated all around the world. Raising awareness among doctors and women on disability should have a positive impact by removing those prejudices which consider persons with disabilities as second-class citizens. I am convinced there is a strong need to change social attitude and prevent decisions automatically in favor of eliminating the life of persons with disabilities. This is crucial to making a step forward to achieving the fulfillment of human rights and a more inclusive society.